Just Like You Said It Would Be

Well, my summation of the visit to the Chronic Fatigue Clinic changed in tone a little when I received the paperwork and called to make a follow-up appointment. The next available opportunity to see the main clinic doctor is not until the end of April. After he asked me no questions and spent only about 20 minutes with us, I can’t ask my questions and get some advice on how to live for another 3 1/2 months? That’s almost a year from when I first picked up the phone to call them. What if I didn’t have an amazing GP and she hadn’t referred me to the Good Doctor? Would I just be floundering on my own all this time? I’m disgusted. The system is broken. There are no options for us. I guess I would have gone to specialty clinics and alternative medicine practitioners that don’t take insurance… So, I’d be in an even worse financial situation.

You can see below why I was annoyed (murderous) when I got the paperwork in the mail today. Only one of the boxes has a check mark because they didn’t do any blood tests and they didn’t touch me. They checked “‘tender points’ on your muscles” because I told them my muscles are sore. I haven’t had a blood test done in a year. They never said anything like, “There are these tests that we can do, but it’ll have to be the next appointment” or anything that might reassure me that they’re not either lazy or skeptical or both. Or the system just does not work.

CF clinic 001

And the referral to see their therapist says, “Patient with fatigue. Please evaluate for CBT. Also depression and anxiety.” My bubble is burst. It’s just like all the ME/CFS patients online said it would be. Graded exercise and CBT for depression and anxiety. I’m depressed my life is gone and I’m anxious that I might never have a good quality of life, but I’m not depressed and anxious clinically. So, why should I go back to see him? Is he at home in the evenings pouring over the medical literature and the studies like I am? Is he reading one after another personal story on blogs and in forums? I know more than they do and, more importantly, I know my body more than they do. I’m on my own in this.

CF clinic referral 001

PS: Our appointment was January 3rd, 2013. Idiot.

I can see too many mouths open
Too many eyes closed, ears closed
Not enough minds open


“39 year old woman, looks like shit and in apparent hell.”

Today I read a post on a CFS forum titled “disappointed reaction from sister-in-law” which had me fired up in a way that is a rarity since I left my job. This woman had told her family she would not be able to attend a baptism on December 23rd and also be able to come over on Christmas Day to participate in all the festivities. Her sister-in-law asked, “Why? Are you sick?” and then, seemingly fed up with the CFS/ME/FM “excuse”, the sister-in-law decided to educate her on what the disease is and why she should be able to attend family functions. Why? Are you sick? My pulse is racing just typing that. It is utterly reprehensible that this disease is called chronic fatigue syndrome and that it is characterized by “post-exertional malaise” and that all medical tests are relatively normal and that we don’t look as sick as we are. It’s such an unbearable injustice to add this insult to injury.

It’s not just friends and family. I have given up talking to doctors after I realise they have zeroed in on my type-A personality or obsessive tendencies or the sleep problems I’ve had my whole life or the fear of getting sicker. It happens every time. I had a visit with a new sleep doctor today and I talked about my night sweats and then about how I’ve always been a light sleeper. I joked (kinda) that, even in sleep, I wanted to be sure I heard an intruder. Her next questions were about sexual abuse and anxiety and I realised I’d said too much. As a patient, you can’t really be 100% honest – because they’re DOCTORS, their job is to see what you don’t. However, I think the majority of the time patients are pretty self-aware. I had to steer her back. No, no, no, these night sweats aren’t from anxiety – they’re from death taking over my insides so all the fluid in my body is squeezed out of my pores over the course of eight hours. You can’t imagine how much fluid there is in a body. And my sleep problems now can’t be equated to my lifelong insomnia and lack of deep sleep – this year, I am tortured, thrashing, contorting in pain, in muscle spasms, constantly waking, never peaceful. Luckily, in the last three or four moths, I’ve gotten a handle on the sickly night sweats – by realising they were caused by over-exertion and took everything down to the “housebound” notch. But, my point was, I realised there wasn’t much point in recounting my story to this new doctor. She wouldn’t be able to shed any new light and, in fact, it was the opposite: it was a long appointment, it was difficult to tell her everything from the beginning, it was disheartening that she didn’t really say anything about my sleep – which is why I was there – and, in the end, she said she was leaving the practice at the end of the week. Wow. More wasted time, wasted energy, wasted money. But I had to go for insurance to cover my cpap machine. That’s the deal. That’s the racket.

I got off track: Why? Are you sick?

I used to say that I thought everyone in the world should work one week in a restaurant. That it should be mandatory in high school or college for each student to put in a minimum of 50 hours, rotating positions so that you have some concept of what it is all about. I usually would declare this after some moron degraded me or tried to pinch my ass or ordered something without looking at me, without saying please or thank you. And I mean ordered it – as in, gave me an order. I was an actor, so I’d smile through it. But really what I was thinking in my head was, you won’t get to me because I’m smarter than you, I make more money than you and I guarantee I’m happier than you. It worked for a long time. Until, one day, there was no amount of money that would have made me give one more performance.

Fast forward ten years and now I think everyone should spend one week in my house. Or the house of anyone with M.E. Actually, I wish we could all spend a week in a thousand different homes in a hundred different countries, expanding our understanding, knowledge and compassion…. But, this is what I know right now: this house, this disease. I wish the doctors and the friends and the employers and that lady’s sister-in-law could all live with this for a week. And I don’t even mean live with M.E. – I just mean live in the house with the person with M.E.

Let me narrate to you how I feel in the morning, the inventory I take of my body, the pain in my bones as I get up and dress. Let me talk to you about my food choices – what will cause me the least distress, what will help the nausea, what will be the least likely to aggravate the IBS, what I can make (or ask my husband to make) with no grains, dairy, gluten, legumes, or eggs. I will show you how I decide whether I have the energy to shower (involves standing up) or do laundry (involves going downstairs and leaning over) or empty the dish washer (reaching down and reaching up multiple times) or walk in the yard (involves boots, coat, cold, taking steps). I will tell you all day, every day how badly my head hurts and how much my hands ache and how broken my back is. You’ll be able to watch me grimace every time a dog barks and close my eyes when I walk into a room that doesn’t have a dimmer switch and massage my neck endlessly, have trouble getting out of my chair, walk like I’m crippled, cover my ears when the ads come on the tv, begging you to mute it. I can explain how every day I weigh the pros and cons of medications: Will this take care of the pain or give me vicious bounce-back headaches? Is it worth taking so much of this knowing the liver problems it can cause? Will I be able to tolerate the nausea, dizziness and insomnia of this long enough to let the good kick in? Will this help me sleep but not give me a hangover? Will this help my muscles enough that it justifies the bowel intolerance? Is this helping enough to justify the $60 price tag? Is this worth trying even though it suppresses my immune system? You’ll see how carefully I go to different areas of the house, how every trip is calculated: never, ever go from one room to another without taking something that needs to go there, too. No wasted movements. You’ll see how I plan phone calls on my calendar: no more than one a day and none on the days that I have doctor appointments. No wasted energy. And you’ll see how often I have to lie down in the dark and how early I go to bed and how quiet I’ve become. It’s very understandable why doctors would think I am depressed – my hair isn’t brushed, make up doesn’t exist in my life anymore, I have no energy for chipperness and no need to form connections by chit chatting. No wasted words.

Worse than doctors seeing the wrong thing, though, is doctors not seeing anything. I read my records from an appointment earlier this year – in the very sick, dark days – the notes said, “39 year old woman, well groomed and in no apparent distress.” All the fight just drained down my body, out of my feet and into the earth. I felt defeated and limp. I get it, this is how they describe their patients… certain terminology is used… But, if I wasn’t in apparent distress, then… Well, then, he needs to come live with me for a week. Maybe I’ll make him dinner and then we’ll walk around the block and have a lengthy, animated discussion …and then he can watch what happens the next day. He’ll be able to see how I curl up in a ball weeping from pain, unable to speak, unable to move, unable to eat. And maybe he’ll think, Distress is too small of a word. In fact, malaise doesn’t really cut it – and neither does fatigue. How about chronic persecution syndrome? How about post-exertional perdition?

Are we sick? Yes. We’d rather not have to plan every hour and foresee every hurdle. We’d rather not isolate ourselves and lose contact with those we love. We’d rather be at every baptism and birthday and Christmas celebration and dinner date. In fact, given the chance, I’d guess that people with ME/CFS as a whole, would be the life of every party. We’d be the ones dancing, singing, eating and drinking until the wee hours of the morning. Wasting as much energy and as many movements and words as possible. 39 year old woman, dressed to kill and apparently having a ball.

Tipping the Earth off its Axis

I’ve regressed again. For almost two weeks after the Worst Headache, I felt stronger and had more energy. My pedometer showed this many steps over the days:


And then…


That last one was yesterday. I didn’t do my stretches for the first time in ages. I haven’t walked laps of the house in the last two days. I’m hurting. I’m still having a hellish time with the CPAP. Not only at night when I have problems for all the previously-mentioned reasons, but during the day I’m dealing with IBS issues from the air that I swallow. They call it aerophagia and I’ve got it bad. Within minutes of putting the mask on my face, I have pains in my stomach from the trapped air and then, the next day, I have pains in my lower abdomen as it slowly, slowly moves downward.

I’m sleeping 6 or 7 sporadic hours and I can’t adequately articulate the stiffness in my body. Everything is inflamed: muscles, throat, lungs tight, eyes swollen alarmingly… A week ago, I said to my husband: “Maybe it’s gone…” It’s quite pathetic that I still think that way ~ that a few better days equal recovery. Yesterday, I couldn’t stop crying ~ not from my current state or the loss of my former life, but from the fear that I will get worse. There are so many people with ME that are so much more disabled than I am and I am terrified every minute of every day that I haven’t seen the worst of this. As I start to go backwards, I think, What if I keep sliding? What happens if I’m unable to take a shower or get to the bathroom or sit up or talk? What if I have to go to the hospital and I contract MRSA or sepsis? I know it sounds like I need anti-anxiety medication ~ and I probably do ~ but I refuse. Meds create more concerns for me. Is it a coincidence that I started to feel better during my wash-out period?

I realise that fear is debilitating and can create a self-fulfilling prophecy, so I work very hard moment-by-moment to be mindfully in the here and now. I truly do. It is my new career: You are alive. If you are breathing, there is more right with you than wrong with you. You will be okay, no matter what. You have support. I meditate into the fear and breathe out of it. I tell Mr. Fear that I understand his concern, but that he needs to take a seat and be quiet now because I have everything under control. But it is fucking hard. I’m not sure I DO have it under control. I think, actually, this disease is in control. When I feel this way… as symptoms intensify… I want to start screaming. I want to scream my fear as loud as I can. I want to wail and bite and punch and kick. If I unleashed it, I feel my fear could fill the whole world, ricochet off of mountains, travel up rivers, raze cities to the ground, create tsunamis and tectonic shifts and tip the earth off its axis.

I read somewhere that worrying is like praying for things you don’t want to happen. Yesterday, my massage therapist said, “Just keep saying: I am strong. I can do anything. I’ll get better.” So… deep breath. It’ll be slow, but I will get stronger, I will get better. I’ve just never been a very patient person.